MPIP: Melanoma Patients Information Page

The MPIP is the oldest and largest community of people affected by melanoma hosted through the Melanoma Research Foundation. It is designed to provide support and information to caregivers, patients, family and friends. Once you have been touched by melanoma—either as a patient or as a family member or friend of a patient—you become part of a community. It is not a community anyone joins willingly. But if you must be part of this group, you will find no better place to find the tools you need in your journey with this cancer, and the friends who can make that journey more bearable.

The information on the bulletin board is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.

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Melanoma Prayer Group on Facebook just posted this

share about this FREE event, March 28th, in Tempe Arizona...attend in person OR online! Visit the page for full info! This looks REALLY good!

http://www.patientpower.info/event/melanoma-phoenix-2015

 

 

One of the most common and among the most dangerous cancers, melanoma has seen some tremendous leaps in research, particularly in immunotherapy, which continues to increase our understanding of how to treat melanoma at various stages of the disease. On Saturday, March 28th, in Tempe, Arizona, Patient Power and Banner MD Anderson Cancer Center will hold a free in-person melanoma town meeting for patients and caregivers at the Phoenix Marriott Tempe at the Buttes where you and your loved one can hear the latest melanoma news from leading melanoma experts. 

Hear about emerging therapies, understand current treatment options and learn about support resources. 

During this interactive town meeting, you will have the opportunity to meet and connect with experts, other patients, survivors, and caregivers touched by melanoma. Share your knowledge with your peers, learn and become inspired. 

Judy (loving wife of Gene Stage IV and now NED)

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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MindyD's picture
Replies 2
Last reply 3/5/2015 - 7:07pm
Replies by: Kim K, Julie in SoCal

Hi all,

I am only 7 weeks post-op from a WLE on my back, and SNB (neg).  2 days ago, I noticed a new spot about 2 inches from my fresh scar and had my daughter check it out.  She said it looked like a "popped pimple"...   so I thought nothing of it.   However, it seems to be evolving rather quickly...  Today she looked at it again, and it is bigger and now dark red with a darker brown spot on the side.  It feels exactly like the original primary... itches like crazy but stings and burns when I touch it.  I had her take a close up pic, and it even looks like a "mini me" version of the original. 

If the beast is back, would it be considered a local recurrence or an in transit met?  I find it hard to believe that a recurrence would happen this quickly, especially given the huge margins my surgeon took.  He initially said the incision would be 6 cm total, but it ended up being 6+INCHES.  Still not sure why.  

Has anyone heard of this kind of recurrence so quickly after a WLE?  I know I "shouldn't worry until we know for sure", but easier said than done, right?  The idea of doing this surgery/recovery again so soon is freaking me out!       

Appreciate any insight... 

Hope everyone is having a great week!!  :-)  

xxoo

- Mindy

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Julie in SoCal's picture
Replies 3
Last reply 3/5/2015 - 4:52pm
Replies by: Julie in SoCal, Anonymous, Mat

Hi there friends!

Thanks so much for your good wishes!  My scans yesterday showed that I only have the one met in my arm. So I'm still feet in stage 3c and toes in Stage 4- metaphorically, of course ;-)  This is such good news!

So, the plan is to start pembro next Wed.  I'll have scans after the 4th round and evaluate things from there, but I will probably be on it for at least 6 months, possibly longer!

Something Rock Star Doc said yesterday that caught my attention was that it was rare for someone to have such a good and complete response to IPI as I had to recur.  I thought this was interesting in that it helped with my disappointment. #$%^&* you melanoma.  But I'm not sure I like falling into a rare category.  But then as it is with statistics like this, it might not mean anything - someone has to reach durable response, it might as well be me!!

Thanks again all!

Julie

Stage 3c: WLE, SNB, LND, HD-INF, GM-CSF, INF, Keytruda?

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arthurjedi007's picture
Replies 3
Last reply 3/5/2015 - 4:38pm

Thanks to the folks on here I was able to find even locally an upright MRI.

My next big scan after next week is a pet and I can't find that they have created an upright for pet. Does anyone know if there is one? 

Artie

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Anonymous's picture
Anonymous
Replies 0

Been thinking about you today.I hope that you get good scan results.Shalom

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It is translated to four languages now:  http://melanomainternational.org/events-webinar/patient-experience-video...

Very uplifting for stage IV patients

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Anonymous's picture
Anonymous
Replies 1
Last reply 3/4/2015 - 9:50am
Replies by: Anonymous

Does a melanoma in situ have a clarks level?

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yazziemac's picture
Replies 1
Last reply 3/4/2015 - 9:08am
Replies by: Ed Williams

Hi

My husband, Pete, was originally diagnosed with Stage 3 in July 2013 and has had rapid progression since then:  January 2014, November 2014, February 2015.  He now has multiple mets in liver, muscle and bone and starts Ipi next week.  Is there evidence to suggest that he has a poorer prognosis because of the rapid rate of progression of his disease, as opposed to someone who has years between new mets?

 

Thanks for any information on this.

 

Yasmin

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Shelby - MRF's picture
Replies 4
Last reply 3/5/2015 - 9:34pm
Replies by: CHD, mary1233, Shelby - MRF

Dear MPIP Community:

The MRF is working to have a bigger and more impactful presence in the mucosal melanoma space and we want to hear from patients who have been impacted by this rare form of melanoma. Please help us by taking this 9 question survey. Your feedback will help guide our decisions on future advocacy and education efforts.

The survey can be found HERE. Thank you in advance for your help! Please feel free to share this survey with other people impacted by mucosal melanoma - we truly appreciate it!

Sincerely,

Shelby - MRF 

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Jen P's picture
Replies 1
Last reply 3/3/2015 - 5:54pm
Replies by: Lil0909

Does anyone here from Boston see Dr. Ryan Sullivan at Mass General or Dr. Donald Lawrence at Mass General?  Just trying to find out what you think about them and their bedside manner.

 

Thanks,
Jen

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_Paul_'s picture
Replies 8
Last reply 3/4/2015 - 11:43pm

So I just got a call from Dr. Lee here in Seattle who is the principal investigator for the TIL clinical trial at the SCCA. She informed me that not only were they able to successfully harvest my TIL cells (they have been incubating in a dark lab somewhere for the last 5 weeks in what I like to refer as "melanoma stew"), but that they show very good tumor infiltration. They are now frozen and available for when I need them.

I had my second infusion of Keytruda last week and it’s too early to know if it’s working, but if it’s not, or stops working sometime in the future, I have a new Plan B waiting!

- Paul.

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porrige's picture
Replies 4
Last reply 3/4/2015 - 11:53am

Hello Guys,

My sister is just after finishing her two weeks of whole brain radiation and recovering at home, I am so worried about her as her husband has told me that she is completely exhausted has terrible headaches and no mind to talk to anyone and she is  so fatigued. The poor man is so worried about her, and we her family are so helpless to do anything as she lives in Australia and we live in Europe. Its heart breaking for us as we are so powerless to help them right now, and all we can do is send messages, hope and pray. If anyone here has had radiation for Mets to the Brain, can you tell me if these symptoms are from the radiation and if they are will she be like this for long, she is hoping to start a new drug treatment as soon as she settles. She has been through so much recently, with the seizures and exhaustion and missing everyone, I would love to be able to just find out some more so that I can share with her amazing husband who is solely nursing her at the moment.Thanking you all.

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dmk252003's picture
Replies 2
Last reply 3/4/2015 - 2:03pm

Has anyone had IV Hydration while doing yervoy treatment?

I just received an email from my moms oncologist stating that she ordered hydration IV with her yervoy treatment due to abnormal creatinine test result.

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Savvymama's picture
Replies 3
Last reply 3/3/2015 - 3:37am

My mom is 58 years old and presented with stage 4 melanoma in her lymph nodes (neck and groin) in October 2014. She was taken off of Yervoy after only one dose because it dropped her platelet count to 0 and her hemoglobin to 5.5. She had active bleeding. She was hospitalized for 10 days while doctors tried to get her blood counts higher. She then started on Keytruda and was going to have her fourth infusion today but her PET scan showed no tumor response to Keytruda. Tumors are pressing on veins in her legs causing major swelling to her lower extremities. Her doctor will be starting her on a chemotherapy regimen for Taxol and Carboplatin. Does this seem like the next logical step? She is BRAF +. I'm a pediatric oncology nurse so I'm very familiar with chemotherapy but there is a lot I still have to learn about Melanoma. Any advice?  Thanks.

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Before my most recent radiation and now again whenever I try to sleep in my recliner I can no longer recline it all the way because fluid collects in my throat and I wake up choking. The most I can go seems about 45 degrees.

The fluid i spit up seems to be anywhere from clear watery to very white with various shades in between.

i would normally just deal with such a minor thing but I have another head mri Monday the 9th. Although I requested the open mri this time and it is very difficult with all my spine issues I have no idea how I can do it with this choking issue.

i know how important the head mri is so I'm very worried I can't do it with this choking stuff. I did find there are reclining mri but they seem to be for the arms and legs. I've seen a picture of a very large open mri but it just showed a guy lying flat.

I've thought of asking for some med to practically knock me out but then I think what if the fluid builds in my throat and I can't press the ball.

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